Gavin’s Story

Posted on 2016-04-13

When Gavin was between 1 and 2 years old, we started noticing that he dropped his chin to look out of the tops of his eyes often. Shortly after, we started to notice in photographs that he had a “Glow” in his eyes. Sometimes the “Glow” would show up in the right and sometimes the left, but always when the red eye was used on our camera. I asked the pediatrician many times if he felt I should be concerned, he said no.

I took him to Jules Stein, where a pediatric neuro-ophthalmalogist diagnosed him with extreme strabismus and also a condition called downbeat nystagmus. He decided to follow him for 6 months. He later suggested dual surgery to correct both conditions, but warned that Gavin would irrevocably lose his peripheral vision. We decided to shop around for different opinions.

The fourth doctor we interviewed was Dr. Mark Borchert at The Vision Center at CHLA. We felt the weight of the decision, but had received varying opinions about what surgery or surgeries should be done and in what order. Since the nystagmus is a symptom of a larger issue – usually a problem in the cerebellum – some doctors wanted to run more tests to find the true diagnosis before performing surgery. Dr. Borchert was the first to tell us directly, that by doing nothing at this point, we were, in fact, making a choice – that our son would certainly lose binocular vision for life, if the strabismus is not corrected by 3 years old.

We put him in surgery at The Vision Center the following week with Dr. Borchert to correct the strabismus, assuming a follow-up surgery for the nystagmus lay in our future.

Thanks to Dr. Borchert and The Vision Center, Gavin happened to be one of those cases that the strabismus surgery helped to correct his downbeat nystagmus – so both conditions were helped immensely with one surgery. He still has his peripheral vision and at 4 1/2 years old he even “graduated” out of his glasses. We were blessed to have had The Vision Center operate on our son. I am so proud and excited that “Know The Glow” is an advocate for helping families catch the glow in children’s eyes. I know that if we had not, my son’s eyesight would have been changed forever.